"You must be the change you want to see in the world." – Gandhi
(This is very long, but please bear with me – take as long as you need to read it, and don't overexert yourselves.)
Before now, we've relied on charities and fundraisers to bring us hope (and who can blame us when many of us are housebound?). But has much of a difference been made so far? Every day on here, I see new posts from members who have been ignored, discriminated against, ridiculed, and abandoned by the people who should be trying to help them – the medical community.
Even with the few people and institutes who support us, most sufferers don't know about, can't afford, or can't get to the places that are offering more support or private treatment.
According to the NHS website, many of us "adjust [our] lifestyles to improve" our symptoms. Any adjustment of our life styles is not by choice. Losing our jobs; losing our friends; staying indoors most or all of the time...these aren't things we choose. And often, our symptoms don't even improve because of it.
One NHS "treatment" for ME (if a sufferer is actually offered any) is Cognitive Behavioural Therapy. I'm not claiming that this can't help some people deal with accepting the diagnosis or with the guilt or sadness that ME can bring, but it should not be listed as a treatment. It does not treat our symptoms of ME – only emotional consequences.
The NHS website states that this therapy can help us to "control" our symptoms and can challenge "any thoughts that could prevent symptoms improving". The implication that sufferers could be mentally stopping their improvement is very offensive and only furthers the belief of non-sufferers that this illness is psychological.
What else do they advise to combat our exhaustion and numerous other symptoms? Exercise. More and more of it. Because apparently, the more we exercise over time, the better we get. This "treatment" is rejected not only by sufferers, but by ME experts who understand that the condition is neurological.
Are these the "treatments" offered to sufferers of other neurological illnesses? No, because the tests for diagnosing ME only rule out other illnesses – we aren't offered the ones which show how our brains are affected or the viruses we have, and therefore many people don't know that it is neurological. And also, no, because ME doesn't kill us. We just continue to suffer. Often alone.
Is this fair? Of course not.
For my university dissertation, I discussed ME and the continued lack of support sufferers receive from the medical community. I found multiple studies reporting neglect of patient care; widespread belief of it being a psychological illness; GP confusion regarding diagnosis and what steps to take after a diagnosis has been made…
These studies collected information by asking either patients, patients and their GPs, or General Practitioners alone. They give a frightening insight into the neglect and stigma sufferers still face.
It has to stop. It's been like this for far too long.
The blogs, the articles, and the studies aren't making a difference. Individually, we aren't being listened to and, individually, we will continue to be ignored. I say we make a "stand" together. In this age of technology, we don't need to march the streets of London in protest – we can do it online.
Please help me. We owe it to ourselves for the lives we haven't been able to live. Even if you have little hope for yourself, think of future sufferers. We have to try, and we have to keep trying until we get results.
Here's what I propose as a first step. I've made a script of some of the important information that I believe the NHS and anyone else responsible needs to address. We divide it between us and put it into a video. It might not seem like much, but it's only a first step, and so many people these days have achieved something using this method.
The impact will be bigger if as many of you contribute as possible. In the past, I've encountered people who don't believe that ME sufferers are still being treated the way we are. People need to understand that there aren't just a couple of "bitter" sufferers who have had bad experiences. There are many of us.
I don't want this to be my campaign; I want it to be our campaign. This is our fight, even though it should not have come to this. So, the script below is just a guide. It doesn’t have to be followed exactly.
The reason I believe the lines should be kept short is because people are more likely to pay attention when there isn't just one or two people talking a lot. If it was a popular idea amongst participants, individual profiles about the struggles we've faced could be done at a later date.
Some of you may be camera shy. I am. I have terrible self-esteem and hate being in the spotlight, but I'm willing to put that aside for this. You don't need to state your names anywhere; they wouldn't appear on the screen (but it might be good to state how many years you've had ME for).
If enough of you are willing to participate, I would happily put all of the clips together into a video and get it on sites like YouTube. But if none of you are interested, I'll have to get someone to drive me around the country and throw leaflets out of the car window calling for fellow sufferers to unite
(so I'm really hoping that I can count on you lovely folk).I've set up an email address for clips to be sent to: fightwithME@hotmail.co.uk
(If you don't trust that I'm not a crazy person who just wants your email addresses, feel free to have a look at my Facebook, where I hopefully appear relatively normal: http://www.facebook.com/profile.php?...le.php?sk=wall)
If we work together, we can make sure people in a position of power see this. We can email it to our local News teams, or send it to them over Facebook, and politely ask them to run a story on it. We can find online celebrities who have (or have had) ME and ask them to promote the video/cause. We can get as many people as we know to watch it.
So, where to begin?
The most misunderstood aspect of this illness that leads to sufferers not getting the support they need has to be the belief that ME is psychological. We just developed depression, right? No? Then tell them. Tell the world how you were happy before this. And if it’s true, tell them how you're still happy (because we know this illness doesn't necessarily result in depression).
This is how we would start the video. (P = Participant.) However many of you are willing to do this section:
P: I was happy
P: I was happy
P: I am happy
Again, this is just a guide. If you don't want to appear, but you have a supporting partner, friend, or family member who is willing to, they could say (for example), "She used to be so bubbly" (writing beneath: "Daughter of ME sufferer"). But these clips should be kept short in order to be punchy, to keep attention, and to fit in as many of you as possible.
After this section, one person would say something like:
P: The only thing that depresses me is…
And the next clips would be of each participant naming a symptom they find particularly upsetting, because we know that another misconception is 'ME sufferers are just tired'. Examples:
[P: The only thing that depresses me is…]
P: Always feeling sick
P: Constantly being in pain
P: Not being able to open my curtains because of hypersensitivity
P: Not remember what I was going to…
P: Losing friends because I'm too ill leave the house
P: Not being able to work
P: Not being able to play with my children/niece
P: Being wheelchair-dependent
Of course, if you participate in one section of the video, you don't have to participate in the rest if you don't want to, but remember: the more, the better.
Next: The confusion over what type of condition ME is needs to be sorted out. Here's the type of thing we could say about this:
P: ME is currently defined by the World Health Organisation as a neurological illness
P: But doctors in the UK follow NICE guidelines, which
P: Despite being updated in 2007 to inform doctors about diagnosing ME, don’t give a clear definition
Quote we could show on screen: "The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the Guideline Development Group (GDG) felt that...the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness, and risked restricting research into the causes, mechanisms and future treatments for CFS/ME.
CFS/ME comprises a range of symptoms that includes fatigue, malaise…"
- NICE Guidelines
P: It changes subject without having agreed upon the type of condition ME is
P: Because of this confusion, some sufferers have been turned down for the flu jab, despite being eligible
P: But doctors are not being provided with the growing number of studies that show ME is neurological
P: Not only does this contribute to the continued belief that ME is psychological
P: Some doctors even refuse to acknowledge the illness and put the symptoms down to depression
What else needs to be changed? The treatments – or lack of – that we're offered (if we are indeed offered any).
My guide for this part of the video (we can divide the sections more or less if necessary, depending on how many of you want to participate):
P: Whilst the main "treatment" of Cognitive Behavioural Therapy may help some sufferers with the emotions ME can cause
P: The implication of this therapy is [that] - quote - "your problems are often created by you”
P: The statement that therapy can help sufferers "control" their symptoms by changing their "behaviour"
P: And by challenging any thoughts which stop their health's improvement
P: Further suggests a belief that ME is of a psychological nature
P: And the only "control" we have over our symptoms is being able to rest when we need to
P: Which usually comes at the expense of losing any normality in our lives
P: But CBT is usually the only treatment offered to us – if any is offered at all
P: That is unless we can afford to pay for treatment in private clinics
P: Which most of us can't do because we aren't able to work
P: And despite often being housebound or/and bedbound, too many ME sufferers don't get past the 13 week assessment stage of Employment and Support Allowance
P: This can leave a lot of sufferers in an even more vulnerable position
How to round it up? I'm struggling with this one, but maybe:
P: Over the years, different articles and guidelines have called for GPs to develop a better understanding of ME
P: And improved support for sufferers
P: But many of us still aren't experiencing this
Here we could have something similar to the beginning, where each participant in this section briefly mentions a bad experience they’ve had with a doctor. For example, I might say, "When I enquired about a sick note for ESA, the doctor sceptically implied that ME doesn't make working difficult".
Or all participants in this section could simply say something such as, "I've been ridiculed by a doctor" (if this is true for them, of course).
Or, if preferred, participants could state labels they've been given. Examples:
P: I've been called lazy
P: Depressed
P: "Can't be bothered to work"
ETC
If we did the latter, different participants could say the same labels if they're true (by which I mean that if one participant said "Lazy", another participant could say the same if they wanted), because we are trying to put across how widespread the ignorance is.
Please feel free to make suggestions about which is best.
And finally…
P: ME is thought to affect up to 0.5% of the population – a higher rate than Parkinson's Disease and Multiple Sclerosis
P: So why aren't sufferers getting the support they need?
P: A clear definition of the illness
P: Recognition from the medical community of the condition's neurological status
P: Better understanding by GPs
P: More information provided for newly diagnosed sufferers
P: And a consideration of the treatments offered in clinics such as Dr. Wright's
Finishing/concluding statement?
I know it seems long, but I've gone over it with myself a few times and it hasn't amounted to more than five minutes.
Thoughts? Comments? Suggestions?
Who's with me? If you are, let us (your fellow Foggies) know here, and say which parts you want to participate in, as some lines are only said by one person and we (assuming enough Foggies join in) don't want confusion over who says what. I would then use the "edit" function to change "P" in this post to participant's usernames once (if) people have stated which parts they want to say.
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